Chiari 1 Malformation

[oldenm]

I was diagnosed with Chiari 1 Malformation a while a go thru MRI and I go to the neurosurgeon on Friday. I have been having severe twitching in my left eye and also I have recently noticed a swollen area on the back of my neck. I have been having dizzy spells and some are so bad I pass out. Are these symptoms of Chiari 1 Malformation.

[selmaS]

  Hi and welcome to the Chiari forum,

AS the above poster mentioned yes, these are some of the many symptoms one DX'd with Chiari may experience.

It is hard to find a Dr that knows and understands how we feel, so to expect a family member or friend to is asking a lot...and I know, we expect those closest to help support us even if they do not understand....but this is an invisible illness...and one no one has heard of....but more are afflicted with Chiari then are with MS....but it is well known and accepted, although as invisible as Chiari.

It is important to know u will need more testing to rule out related conditions....and u will want a NS that is well informed and well experienced....we do have a list of Drs for u to use to research Drs, keep in mind this list is NOT a referral nor an endorsement for those listed on it....just a tool to help u get started, as the Drs on it were the Drs of members here that were to, treated by and liked the Dr, so they added the name....http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

[oldenm]

Thank you. I joined this site because I am scared. And I feel no one in my family understands what I am going thru. Because I do not fully understand it.  I have researched and researched but it is always better to talk to someone who is going thru what you are going thru. Thanks again for responding

[Alicen85]

yes!